Three years ago, one of my patients asked, “Doc, why can’t we talk on the computer?”

The question caught me off guard. In 17 years as a doctor for low-income Medicaid and uninsured people, it was the first time a patient expressed interest in swapping in-person visits with technology. He had moved 40 miles away from the clinic but didn’t want to change providers.

When I told him a FaceTime or Skype visit was not feasible, he then asked if we could talk on the phone or text because he wasn’t working, and this would allow him to spend less on gas. Although intrigued, my inability to meet his needs made me feel inadequate. I wondered how many other people like him wished the same but had never mentioned it.

After that visit, both in the office and on the street I found nearly unanimous agreement about people’s desire to communicate with health care providers using cell phones and the Internet. The few who preferred clinic-based visits, perhaps coincidentally, were either elderly or lived alone and felt socially isolated.

I shared this experience with a few health policy and opinion leaders. Could we transition to health IT solutions for follow up visits and perhaps even to keep people out of the ER? The consensus response was, “Do the poor have access to technology and the internet?”

These responses are not dissimilar from those I received in 2005 when I proposed conducting a computer-basedresearch study for the CDC among prisoners. Seasoned researchers were skeptical and asked, “Are prisoners able to use computers?” “Aren’t you worried about literacy?” The computerized survey was welcomed by the participants and we encountered few, if any challenges with literacy. The skepticism, even now, represents a persistent knowledge gap between decision makers — funders, scientists, researchers, policymakers — and the community.

Research data show nearly 80 percent of persons from low income households use cell phones to text and this number increases annually. The data are also consistent with my experience. Nearly all of my patients have phones and in recent years we have used this strategy to locate and stay connected with many of them.

Whether on the bus, subway, grocery store line or walking down the street, it seems everyone is texting, staring at or talking into a device, even in our poorest neighborhoods. Yet, IT-based health care strategies are exploding everywhere except in low-income communities where, ironically, much of our highest cost health care is centralized. When will we make it a priority? I am convinced the community is ready — even if we aren’t.

Over the last 24 hours many have expressed jubilation over the Republicans’ failure to pass the American Health Care Act. As a physician and health advocate, I see little reason to rejoice because the dissent marshaling the failure was primarily from those who wished to gut the bill even further. This means the next iteration — and I am sure there will be a next — is likely to be even more restrictive. Most people don’t appreciate the value of the Affordable Care Act (ACA) because we don’t hear about its full impact in the media. Instead we only hear about skyrocketing premiums and Medicaid ‘hand outs’ for the poor. Did you know Medicaid pays for nursing home stays, care for the disabled and working families with children who can’t afford to buy from private insurers like Humana and Aetna? Did you know Medicaid also covers health care costs for many our nation’s children? We must protect these assurances of health care. However, I see a few major challenges in doing so:

The messages controlling the narrative, i.e. “It’s a disaster”, “bad health care”, etc. are severely imbalanced. In addition to not only being about the poor, the ACA is not the culprit for delivery of so-called ‘bad health care’. This characterization is about the high cost of premiums for an unknown number of people. I’ve had many patients insured for the first time through the ACA and I take issue with anyone believing we delivered bad care. Citizens who’ve benefitted from the ACA must speak out to help balance these messages.

2. Insurers are responsible for unfairly raising premiums to stabilize profits and no one, including the public, is calling them out on it. Insurance companies are a powerful lobby so why would Congress regulate them more to protect Americans from unfair premium hikes?

3. Numerous people have told me, ‘I don’t want government mandating what I can and can’t do.’ This is interesting to me. Do you pay taxes? That’s only one example. What about home owner’s or car insurance? You can’t buy a house without mandated insurance. What happens if you’re caught driving a car without insurance?

Our problems are often rooted in our inability to compromise and look out for each other. This is no different. Ultimately we have to hold Congress accountable for representing us. If the narrative you’re hearing about the ACA doesn’t represent you- that’s a problem. If the narrative you’re hearing about the ACA ONLY represents you- that’s a problem.

A few weeks ago I entered an elevator with my bike helmet. A gentleman noticed the helmet and commented, “That is great you ride a bike. I wish I could get my wife and daughters to exercise. I want them to learn to swim but they don’t want to mess up their hair.” I asked him what he thought the solution might be. He replied sarcastically, “I don’t know. Water that’s not wet?” He chuckled as he exited the elevator, but the conversation lingered, and I thought, “The beauty industry is fueling the obesity epidemic in black women.”

Black women have the highest rates of obesity in the U.S., and four of the five leading causes of death in black women are linked to obesity. Yet, for many of us, it seems our hair is more cherished than our health. The history and emotionally complex relationship between black women and hair has been highlighted in a controversial film that set social media ablaze with kudos and criticism alike. However, as a medical doctor who for over 20 years has witnessed the health impact of inactivity, our behavior is of great concern to me and continues to weigh heavily on my heart.

SOPHISTICATE BLACK HAIR MAGAZINE, 2011

Images of black women’s hair

A few years ago when we opened the Community Wellness Collective (CWC) in the most underserved, under-resourced residential area in Washington, D.C., we struggled to fill our exercise classes. We established the CWC because over the years, my patients with chronic health conditions told me they wanted to exercise but either had no where to go nearby, could not afford it or needed assistance to get started. Our wellness instructors, on a mission to serve and volunteer their time, would often traipse across the Anacostia River to an empty room. Consequently, I began to casually inquire about reasons for the lack of participation at CWC despite its location in a community with some of the nation’s most glaring health disparities. I learned a lot, but the most disconcerting reason was related to hair. I was told of associations between self-confidence and self-image and hairstyle and how class times needed to coincide with calendar appointments with the hairdresser. If a person had an appointment on Saturday morning, the best time for a class would be on a Friday night when she had no plans to go out that evening. A few women expressed their desire to exercise consistently but were conflicted by the financial burden associated with frequent beauty shop appointments. I was told, “It costs too much.“

Indeed, it costs too much. The long-term impact of prioritizing hair over health will likely bear substantially greater costs associated with preventable diseases, long-term physical disability and quality of life. At a time when obesity rates in the nation, and strikingly among black women, are stubbornly high, it breaks my heart to be reminded the extent to which beauty and hair obsession are so engrained in our psyche and linked to self-worth they continue to drive our choices about health and wellness behaviors. We have the tools and information to combat obesity and other preventable diseases. But amidst the ubiquity, power and influence of the beauty industry, I wonder if we stand a chance. Do we? Let me hear from you.

Last month during a patient’s visit, I was reviewing the demographic sheet in his chart and noticed he’d listed his emergency contact as:

Daenerys Targaryen
2829 King’s Landing
King’s Landing, Westoros

When I asked him about it, he laughed because he was surprised I’d caught the quip and understood the reference. She was the character he most admired on Game of Thrones. We talked about the show for a few minutes and as the moment of levity passed, his smile faded because I wanted to know why he’d chosen to use a fictional HBO character as a next of kin in an official health record. He paused and hung his head in silence. I knew his silence meant he was still struggling with his diagnosis and worse, he probably hadn’t told anyone. A tear fell as he told me he wasn’t ready for people to know he was HIV-positive. I know this reaction well. I’ve written about it before. It’s stigma and it’s our elephant in the room. It’s looming large and threatening to doom progress toward ending the HIV epidemic. Stigma discourages people from wanting to know their HIV status. It causes disengagement from health care. It results in hiding, shame, embarrassment and isolation. As trite as it sounds the solution is talking. We have to talk about HIV because talking about a thing helps normalize it. But we don’t.

Someone recently asked me why HIV remains so highly stigmatized and why people still know so little about HIV and its treatment advances. As I pondered the question I realized it’s because our society stopped talking about HIV 20 years ago. Consequently, our HIV psyche is stuck in the 1990s — a time when HIV was highly stigmatized and largely perceived as a gay, white male disease. It was associated with gaunt and emaciated appearances and death. People remember a time when the treatment side effects could make you feel sicker than the disease itself. If we’d kept talking about HIV as a society, our perceptions would be that HIV is a chronic but treatable sexually transmitted infection.

When I talk to community about solutions to changing this perception, people often say our society doesn’t talk enough about HIV. We don’t. Churches don’t talk, schools don’t talk, artists don’t talk, athletes don’t talk, politicians don’t talk — because it means we’d have to talk about sex. It’s ironic — our society is obsessed with and accepting of images of sex in music, television and film, yet the subject is taboo in our most influential institutions: schools and churches. Many people and institutions are talking about HIV but to combat widespread stigma this conversation must spread beyond us and infused throughout society. Conversations about HIV must be integrated within discussions about other things we talk about, particularly within conversations about health. Even now, despite recommendations most doctors are not routinely screening for HIV during yearly physical examinations.

I was recently invited by a church here in Washington, D.C. to educate its members about HIV. Upon my insistence that each person in the audience find ways to strike up conversations about HIV, a woman asked me to give examples of how someone could strike up a conversation about HIV. I responded by role playing as if I were speaking to someone in a queue leaving church or in the grocery store check out line. The examples helped them understand but more importantly her question helped me see how difficult this challenge can be for people who don’t think about HIV everyday. That’s why we need help from visible people to get these conversations started. Alicia Keys has recently launched an awareness campaign. We need more of this! Imagine if Daenerys Targaryen were to spend a scene educating her minions about HIV prevention. One of my dreams is to meet with Chris Rock and convince him to embark on a comedy tour focused on health in America. I am convinced he can make anything funny. Because comedians have an amazing ability to entertain while educating, we could witness the shift we are seeking if more like him would educate society about HIV. Similarly, I dream of Scandal writers incorporating all the relevant messages in a single episode. That would be powerful!

We desperately need a sea change — something different. I am convinced these tactics would have tremendous impact. A few years ago, I saw a quote by President Richard Nixon posted in the Newseum that says, “The American people don’t believe anything until they see it on television.” I believe it’s true but I’d add… and on the radio and in the movies and on the Internet! When it comes to arts, theater and music, we are impressionable. This conversation has to become more mainstream. We’ve got to talk and we need more voices — visible voices. It sounds simple, but often the solutions to overwhelming problems only require a simple solution. It’s hard to get much simpler than this one.

While scrolling news headlines, a ticker for a recent Washington Post blog by Philips: ‘The Changing face of healthcare’, caught my attention. As expected the article included discussions about our national shifts toward value-based health care and why doctors and our health care system must transition toward becoming more responsive and data-driven. As with many articles on this topic, it was devoid of the patient perspective — health care consumers. The direct patient perspective is chronically absent from deliberations about our health care system transformation and I believe this continued omission will ultimately thwart efforts to improve quality and reduce costs. Patient engagement is central to any strategy to transform our health care system. Why then don’t we consistently seek and incorporate direct patient ― particularly high-cost users’ ― input about realistic approaches to health care innovation and transformation? What we would we learn if we did? I decided to chat about this with a few health care consumers.

During a health education session with low-income residents in Washington, DC, I posed a question to a room filled with middle-aged men and women, most of whom we would deem high-cost, high need users: ‘What would it take to convince you to stop using the emergency room and build a relationship with a primary care doctor?’. I learned three things. First, each of them had at least one negative interaction with the health care system which discouraged them from further engagement. They described dismissive doctors who make them feel as if they are on an assembly line and condescending and impatient health care staff who don’t actively listen to their concerns. Their comments applied to both inpatient and outpatient care. One person said, “Every person I know who went into the hospital sick, ended up dead. That’s why people don’t go”. These interactions and perceptions have eroded their confidence in our health care system as a place of compassion and healing. Consequently, for most of them, absent a dire situation, doctors and the health care system should be avoided.

Second, while they seemed aware of the relationship between preventive behaviors and good health, there was little personal acceptance of this connection when it came to theiractions and preventing disease. For example, they shared stories of people they knew who delayed care for diabetes resulting in leg amputation yet none of them had recently been screened for diabetes nor had they consistently gone for annual physical or dental exams.

Finally, they told me in quite colorful language about their deep and penetrating distrust of the medical establishment. The discussion focused primarily on the relationship between doctors and the pharmaceutical industry. One person said, “It [doesn’t] matter why you go to see the doctor, you’re [going to] walk out with a handful of pills and the medicine makes you even sicker than you were before.” Another said, “the only reason doctors want to see patients is to get rich prescribing drugs people don’t need.” I was a bit astounded by the uniformity of their opinion that doctors are more concerned about pleasing and being compensated by the pharmaceutical industry than caring for them. Health care-related conspiracy theories and distrust are more pervasive than we acknowledge and are impacting patients’ willingness to engage in our health care system.

I have participated in countless public health and health policy conversations. The focus of these health care strategy and program implementation discussions have never been focusedprimarilyon the types of issues raised by these consumers. Whether clinicians, policymakers, innovators, researchers or financial overseers, patients are our raison d’etre and their buy-in is imperative. Therefore, continued omission of their voices will thwart our progress. Addressing their feedback is daunting but we should not dismiss their concerns and suggestions because the solutions seem impractical. Until we strengthen our collaboration with health care consumers, directly acknowledge and consistently incorporate their perspectives into our strategies from conception to implementation, the transformation we seek will continue to elude us for decades on end.

In 2009, while I was on the medical faculty at Howard University, a 61-year-old, diabetic woman was referred to me by her primary care doctor. She was baffled about why she needed to see an infectious diseases doctor. During her hospital stay for intractable diabetes, per CDC recommendations she was screened for HIV but her doctor did not inform her about her new diagnosis. As frustrating for me as this was, I was thrilled she was referred for care and applauded the doctor for testing a 61-year-old woman for HIV. However, by the time I met her, HIV had severely damaged her immune system. She had AIDS. Had she been tested years earlier, this damage could have been avoided by early administration of medication.

Expectedly, once she began medication, HIV became the least of her worries. She began to feel better and consequently over the last four years has gained nearly 100 pounds. Because the HIV infection is completely controlled — her virus is undetectable — every visit we spend less than five percent of the visit time discussing her HIV status. The remaining 95 percent of the time is spent addressing one or more of the following issues: nutrition, strategies to increase physical activity, medication adherence and disclosure of HIV status. She isn’t unique. My recent visit with her is a poignant illustration of why HIV prevention, care and treatment should be integrated into the traditional model of chronic diseases’ prevention and management. Shifting our view of HIV to one of a chronic disease will reduce ongoing disease transmission because its integration into a holistic approach to health promotion and healthcare will reduce the stigma associated with the infection.

Any HIV provider across the country will agree the vast majority of HIV-positive persons on treatment are not medically suffering from HIV. Instead many suffer from the same environmental challenges as the rest of our society. They are often diabetic, hypertensive, sedentary and overweight. This reality has forced the emergence of patient-centered medical homes for HIV-positive people.

It is a model of care that is effective and expected to expand under implementation of the Affordable Care Act. At our clinic in southeast D.C., we have integrated a patient navigator into our clinical team. The navigator’s role is to serve as an educator, confidante and facilitator of entry into care to ensure a newly diagnosed person is linked to our services within 24 hours. Oftentimes, this clinical linkage happens in minutes because the healthcare navigator is available to immediately walk to the person’s location and begin a discussion about their healthcare. We implemented this process because the embarrassingly high rates of patients lost to health care required urgent attention. I suspect a review of primary care engagement for other chronic diseases like diabetes, cancer and heart disease would show similar concerns. Thus this model we have adopted for HIV care and treatment deserves consideration for all chronic diseases, not only HIV because it will reduce costly and inappropriate emergency department utilization and will foster sustainable relationships between patients and healthcare providers. Our clinical quality review demonstrated the value of the immediate linkage by a navigator because the interaction leads to better long-term health outcomes and consistent engagement in healthcare. Integrating HIV disease management into our conversations about and strategies for addressing chronic diseases would be a public health game changer — not only medically, but socially. In fact, doing so would assist in answering the White House’s call for strategies to reduce healthcare disparities.

HIV lingers because there aren’t enough people thinking and talking about it in medical institutions and in the community. And when we do, it is in isolation — within the HIV silo. This lack of attention and silence exacerbates stigma and shame associated with the diagnosis, which in turn discourages disclosure of HIV serostatus. Above all it discourages testing among patients and sadly, healthcare providers.

Consider the actions of the healthcare provider described above. The patient had been in care for diabetes for over 10 years, yet HIV was only considered when she was admitted at a medical facility with a routine HIV screening policy. Had this provider ever discussed her sexual history? If not, why not? Why didn’t the provider discuss the diagnosis? More importantly was the provider aware of the treatment advances for HIV infection and that the majority of new HIV cases can now be effectively managed by a trained primary care provider? Addressing the HIV epidemic will require much more than promulgation and perpetuation of recycled messages, program strategies and silos. As the CDC has been reporting for nearly two decades, we have yet to move the needle on the rate of new infections. We can. And I believe the answer is chronic diseases integration.

AIDS is not a death sentence! Many people still think AIDS means death but it’s not true. Thirty years ago it mattered if a person had AIDS because death was almost certain. Today it doesn’t. Advancements in HIV treatment can eliminate the threat of dying from AIDS but the community psyche is trapped in the past. In 2013 no one has to develop or die of AIDS. Why aren’t we getting this message?

We recently commemorated the 13th annual National Black AIDS Awareness Day (NBAAD). The goal of NBAAD is to raise awareness about HIV in the black community. My singular educational message for black America this NBAAD is that AIDS is not a death sentence! If I could, I would shout this message with a bullhorn from rooftops across the country.

AIDS can be prevented by early HIV testing and treatment. More importantly people diagnosed with AIDS can live a long life if they obtain treatment for HIV. Nowadays people with HIV and AIDS who are on treatment are not dying AIDS, they are dying from other ailments not related to AIDS. An added bonus is that being treated for HIV and AIDS reduces the likelihood of transmitting HIV to someone else.

There is reluctance by many in the black community to accept the truth about advancements in HIV treatment. This frustrates me. The lack of awareness and acceptance in our community hits me in the face in my clinic every week. Last week I saw two patients each illustrating our challenges with awareness and acceptance that AIDS is now a treatable condition.

The first is a man who was diagnosed with HIV in an emergency room five years ago. He presented to my clinic last week because he had developed a rash. When I asked why he decided not to follow up five years ago for treatment he said he was afraid he had AIDS and he knew he was going to die in a few years because there was no treatment for AIDS. He only came to see me to treat the rash because it was noticeable and people had begun to ask him about it. He had no idea HIV treatment was just as effective in people with AIDS.

The second person is an HIV-positive woman known to me because I started her on treatment one year ago. Despite numerous phone calls and notes of concerns sent to her she had not come for care since I wrote her initial prescription. When she arrived last week she nearly too weak to stand. When I asked why she hadn’t returned in a year, she told me she didn’t see the point in taking her medications since she had AIDS. Although I was confident we had covered this information, I again explained why AIDS is no longer a death sentence. She had become ill enough to be admitted to the hospital and this was completely avoidable. She, like so many patients I encounter, can’t fathom the effectiveness of new HIV medications. The community continues to make a distinction between HIV and AIDS. But as a clinician, I don’t. Actually, no one should. Because recent advancements in HIV treatment have rendered the terms AIDS so archaic it serves little purpose in 2013. It doesn’t matter if a person has AIDS!

The term AIDS was coined at a time when we had little information about HIV and worse, when stigma and discrimination were ubiquitous and unavoidable. But now I am convinced it is merely a barrier to our efforts to end this epidemic. Use of the term AIDS should be minimized in our conversations and eventually eliminated because as in the preceding examples, the perceptions shrouding the term “AIDS” discourage testing and engagement in care and treatment. At times I feel like a broken record when educating the community about the availability of new, effective treatment for HIV and AIDS. No one likes a broken record. But if that’s what it takes to make our society understand AIDS is no longer a death sentence, then I will continue to say it any way and anywhere I can. It doesn’t matter if a person has AIDS! It’s treatable and preventable! Get tested! Get treated! Live long!

Please will you help spread the word?

Tell me what you think it will it take to get people to accept and act on this message?

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